Getting used to the new me

I got home yesterday from my post-op appointment with my surgeon.  
First they removed all my stitches and said my wounds are healing nicely.  They said 2 or 3 more weeks and I can swim again and take baths (yeah!!).  They still want me to stay on my pain medication full time and take the next 2 weeks easy.  But, then I can begin to exercise again!

I have an oxymeter which tells me by putting it on my finger what my O2 saturation level is and my heart rate.    Since surgery I have used it often to see if the surgery worked.  Most the time I had really good stats, but as before when I got up and worked a little my heart rate would sore and my O2 level would drop.

The doctors told me to try very hard not to use it.  To listen to my body as to when to slow down, sit down and deep breath, and when I may need a little O2.  That I have to build up my core again and become stronger before I can cut down and come off the O2 while exercising, or activity.

I have to say it is hard for me to live now as a healthy person.  I want to pick up that oxymeter and use it always to tell me when I am O.K. and when I am not.  I have a very hard time trusting myself to be responsible for me.  So, I am still using the oxymeter every so often.  

I will get used to the new health plan.  It has changed 100%.  No O2!  Wow!  For a while I will still carry it with me... just in case.  But, chances are I will not need it.  I can control it myself.  I have to keep telling myself that.  

My 5 days post surgery

The 22nd as planned I arrived at the hospital at 6:30 for my surgery at 7:00.  Brittney, Bill and Layla were there with me and my brother was on his way from his hotel to reach me before I went "under".

Honestly, I don't recall that day or the 23rd and 24th.  Parts of those days are sketchy.  Bill, Britt and Greg left by Friday the 24th.  I was under the impression that Bill or Brittney would stay with me at the hospital until my release... taking turns and coming back to Klamath Falls in-between.  The nursing staff told them I needed rest and they didn't want them in my room.  I kept telling them to just leave and go home and take care of things, that I had good nurses and I would just be laying around being drugged and the hospital staff could take care of whatever I needed.

The 22nd through the 24th I was in the Trauma ICU.  I was well cared for, fed, bathed or washed off, helped to the commode, had my I.V.'s flushed every day, was given all my medications, had water or ice chips without even asking.  They were good nurses who knew what I needed before I even asked for it.

Then around the evening of the 24th they told me as soon as a bed was ready on the recovery ward I would be moved.  Friday night/Saturday morning around midnight I was transferred.  

Being on such heavy drugs I had been hallucinating the entire time and getting moved late night in the dark surely fed into my paranoia.  So began the worse experience of my life.  Each day several times Bill, Brittney, Greg and Robbin (my brothers) would call and ask how I was doing.  Even in my darkest times I always told them "fine".  I didn't want anyone to think they had to drop what the were doing and run to take care of me.  

I can't honestly remember much of the next 3 days so I will only comment on what I know to be fact.

In this room my door stayed shut and the lights remained off, unless a doctor came in the check my tubes or remove them and my epidural, the rest of the time I remained in the dark.  Yes, there was a T.V. but I could figure out how to change the channels.  I slept most of the time.  I was supposed to be given a shot in the stomach once a day to help keeps clots from forming, out of 3 days there.. I got only one shot.  I would call the nurse to help me to the bathroom and she would say back on the speaker that it would be a while.  So, I always got up by myself to use the bathroom.  They had one of those buckets in it to measure stuff.  The entire time there no one checked it, and I was the only one to empty it.  I never was cleaned up or washed.  I through up one day all over my bedding and I called the nurse, she came in and removed the sheets and changed the sheets.  I asked her for new clothes and a washcloth.. nada.
I would occasionally leak urine on my bed and just sit in it until I had enough stamina to get up and get new underwear and a "leak pad".

Sunday night the doctor came in and took out the last chest tube.  I began to tell him how filthy I felt and that I had asked for help but no one ever showed up.  He was the one to tell me I needed to go home.  That I was at more risk being in the hospital for germs and bacteria and pneumonia.  So, Monday morning I called Britt and told her to come and get me.  

My conclusion and advice to anyone facing a major surgery is this.......
Family is there to help you.  I should have never thought I was a burden to them, and insisted that someone stay there with me.  When you are in the hospital alone you are at the mercy of the staff.  If you have someone there on  your behalf then they can demand a bath, or less drugs, or new clothes, or just better care.  That's my surgical story.

I am doing fine at home.  
Thank everyone for their prayers.  I needed every one of them.

Lung Volume Surgery benefits to emphysema patients

Lung-volume reduction surgery benefits emphysema patients

March 28, 2003

By Gila Z. Reckess

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A procedure known as lung-volume reduction surgery (LVRS) appears to improve overall health and quality of life for individuals with end-stage emphysema, and these effects last as long as five years in more than half of this population, according to School of Medicine researchers.

The findings appear in the March issue of the Journal of Thoracic and Cardiovascular Surgery.

Principal investigator Joel D. Cooper, M.D. (right), the Evarts A. Graham Professor of Surgery and head of the Division of Cardiothoracic Surgery, Stephen S. Lefrak, M.D., medical director of the Lung-Volume Reduction Program, and their colleagues found that the success of lung-volume reduction surgery in patients with severe emphysema is overwhelming. – Photo by Bob Boston

The procedure was developed at the School of Medicine in 1993 by the study’s principal investigator, Joel D. Cooper, M.D., the Evarts A. Graham Professor of Surgery and head of the Division of Cardio-thoracic Surgery.

“Evidence of the success of this surgery in patients with severe emphysema is overwhelming, and these latest findings confirm and underscore its potential for treating this critically ill population,” Cooper said. “This publication represents a major, interdisciplinary team effort, which depended on expertise from a variety of areas, including pulmonary medicine, anesthesiology and nurse coordination.”

Emphysema is characterized by destruction and overinflation of the lungs. As the lungs become progressively bloated, they fill the chest cavity and thorax, making it difficult to expand and contract during normal breathing.

The disease relentlessly progresses and is responsible for close to 17,000 deaths each year in the United States, according to the National Center for Health Statistics.

In select patients, LVRS provides an alternative to lung transplantation, which until recently was the only option for patients with end-stage lung disease that cannot be controlled with drugs. By removing the most diseased portions of the lung, the procedure provides the lungs with more room to expand within the chest cavity.

Though LVRS is not a cure for emphysema, studies suggest that the surgery increases breathing capacity by more than 50 percent. Such improvements allow otherwise debilitated individuals to resume many normal, daily activities, including moderate exercise.

This study is the first to examine the long-term endurance of patients following surgery.

The research team maintained a detailed database of lung function and quality-of-life assessments for the first 250 patients who underwent LVRS at Barnes-Jewish Hospital between January 1993 and June 2000.

Follow-up evaluations were performed six months and one year after surgery and again each year afterward. Patients were followed for an average of 4.8 years.

All participants first were enrolled in a rehabilitation program for about three months prior to surgery and were given medical and dietary programs to make sure they were as healthy as possible for the operation. They also remained on fitness and medical regimens after surgery.

At the conclusion of the study, more than 60 percent of the 250 patients were still alive, and only 18 patients had received a lung transplant since undergoing LVRS. Without surgery, it is estimated that half of the 250 patients would have died within three years and that those still alive after five years would have significantly deteriorated.

Overall, the surviving LVRS patients still had measurable improvements in lung function after five years. For example, patients were tested to see how much air they could blow out in one second, a measurement known as forced expiratory volume.

Six months after surgery, 95 percent of patients had improved on this test by an average of 54 percent. After five years, 53 percent of patients still had better scores than before surgery, though they were only 7 percent better.

The team also measured the amount of air left in the lungs after a deep exhale, a value called residual volume. People with healthy lungs have low residual-volume scores because very little air remains in the chest cavity after breathing out.

Evaluations six months and one year after surgery revealed that 90 percent of participants had improved residual-volume scores, and that residual-volume values declined an average of 30 percent. After five years, 79 percent still had better residual-volume scores than before surgery, and the average improvement was 14 percent better than pre-surgery scores.

Quality-of-life assessments also were positive: Almost 80 percent of patients still reported better quality-of-life scores five years after surgery than before surgery.

“This procedure is not a cure for emphysema,” Cooper said. “No matter how successful the operation, emphysema continues to degrade the lungs and progressively impairs breathing.

“However, our results confirm that LVRS can in fact extend patients’ lives and allow them to continue participating in normal activities of daily living.”

Determining selection criteria is one of the most controversial issues in measuring the effectiveness of LVRS. Therefore, Cooper’s team analyzed data from patients with potential risk factors.

The team found that individuals who required surgery to the lower portion of the lungs benefited from the procedure, but their lung function degraded faster than in individuals with damage to the upper portion of the lungs. Other identified risk factors include advanced age, male gender and very low forced expiratory volume.

“We strongly believe that patient selection is one of the keys to success for this procedure,” Cooper said. “With rigorous preoperative preparation and stringent participation criteria, lung-volume reduction surgery appears to improve life expectancy and quality of life for patients who otherwise have very poor prognoses.”

Time for LVRS

I have been holding off writing this blog.  The less I think about it, the less real it seems.  Nice that I picked now to be a scaredy cat!  

I'll get to the essentials first:

On the 19th we will drive 5 hours up to Portland.  We will make one pleasant stop along the way to meet one of my friends from the "Ex" smoking site that I belong to.  I am really looking forward to that.
The 19th we will just drive and get to the hotel and rest.  
I am finding that for long periods of time the vibration of the car on the road bothers my lungs and makes me cough.  This is a new condition, or maybe not?  I really haven't had many long trips in a car until recently.

The 20th I have a meeting with the surgical staff to go over the surgery and what to expect, what can happen, and answer any questions.

The 21st I will go back to the hospital to have a pre-op visit and have most likely blood work, maybe some testing like MRI or Ex-Rays or whatever.  Then I am told to go back to the hotel and relax, eat a good meal and get a good nights rest!!!  LOL  I am sure I will sleep like a baby.

The 22nd I am to shower, wash and do my hair and this will be the only time in at least a week that I can shave my legs.  This has to be done around 4:00 a.m. so I can be at the hospital in the surgical unit by 5:30 a.m..
Surgery is to last 3 to 6 hours.  They will put 3 holes from my arm pit down on my side.  They will repeat this on both sides, then put one hole either in my chest or in my back.  These holes is how they will do the surgery.  They will be using camera's, suction, a cutter that has a stapler attached.  Then they will remove what they need to.  Try and make sure there are no air leaks, which is common.  

I will be in ICU at least one day, then taken to a private room where there is a bed for Bill or Brittney.  I think they are planning on taking turns staying with me.  They will have me up walking the first day out of ICU and keep it going a little longer everyday.  I will be sitting in a chair a lot.  Many people get pneumonia while recovering from these surgeries.  So I will be upwards as much as possible.

I don't really have many comments about this, except to say if something were to happen to me... Jesus look after my family and give them strength.

I don't want to talk to much about fear.  Because I have been prayed over and have healing in the lord.  I also truly believe that either way "I" will be fine.  Either I go to be with Jesus... or I come home to my family. It's my family I worry about.  So... I won't go on any further.  

Please keep me in your thoughts and prayers as well as my family and my doctor.  

A hopeful update

It's been a long time since I have blogged.  Shame on me!  There were times I wanted to come here and write, but I did not want to complain, other times I didn't feel well enough to spend time sitting here using my brain to come up with words lost to me.


So much has gone on since I was last here, so this may be a long blog.  Hang in there.... take a break and go for a walk if you get tired of reading!  ;)


I will start with my emphysema which is what started this blog in the first place.  I have had some rough times in the last months.  There is a terrible heavy pain that used to come and go.  Now it stays and I find myself taking pain medication and gritting my teeth through it daily.  (I dislike pain meds very much)  Because my lung function has declined so much now most of the new symptoms are showing up in my heart.  I am now told to use SALT.    For so long I had been dieting and had been told to stay off the salt, so it had been a few years that I wasn't using it.  Now I find out that it will help raise my low blood pressure (68/54) or a little higher most times.  
I was informed today by my Primary Care Dr. that when blood pressure gets that low it is trauma criteria.  Who knew???  When I get really dizzy or my head gets fuzzy I go lay down with pillows under my feet for an hour or so, and it slowly rises.  She told me I should be at the hospital then.  I know the procedure.... I go into the emergency room... they take my vitals, check for blood clots, ex-ray my chest, give me pain meds and after about 4 hours..... send me home.
I also was put on Digoxion and was told today that Monday morning not to take my meds and to go back to the Dr. to get a Digoxion level.  They think they may increase it to get my pulse rate down which still is running above 100 even resting.


My Pulmonologist sent me to Portland to see a CardioThorasic Surgeon about doing a Lung Volume Reduction Surgery.  It took a few weeks to get all the paperwork sent up and then the beginning of June Britt and I went up to the Oregon Health Sciences Medical Center.  The first day I saw the CardioThorasic surgeon and he went over my files and the testing I had done here by my Pulmonologist.  He told us that he hopes that one set of numbers is wrong, because if they aren't wrong then it means I have a lung defect which disqualifies me for LVRS and puts me right into a double lung transplant.
So he scheduled a full day of testing in July that I will go back up for.
Then the 2nd day I saw an OBGYN Dr. concerning my hysterectomy and fibroid tumor that I need removed.  She examined me and said that she would do the surgery, but first wanted me to see a URO-OBGYN, to see about putting a mesh sling in during the hysterectomy.  Having two surgeries at once would put less strain on my heart and lungs.  
I could not get an appointment with her then so I will see her in July when I come back for lung testing and hopefully scheduling this surgery.


The Cardio Dr. told me he was already made aware of this issue and suggested I have that surgery first so I would have time to heal and make sure there are no infections and everything is healed or healing nicely before he would mess with my lungs.


So actually I know nothing new... but I am now at the right hospital and talking to the right surgeons.  I am hoping my next appointments with them will help me get some answers and maybe even take steps toward fixing some of this.

So, I believe I mentioned in my last blog that I had started to go to church again.  I can't remember where I heard it but someone said they had also been a crisis Christian.  Boy I hope I am more than that!
I am a child of God.  I feel his spirit and have been healed.  I still struggle with this however.  God's goodness and forgiveness is sometimes hard to imagine in a world so much in chaos.  Our Associate Pastor ordered a small pocket book written by Dodie Osteen.  It's titled "Healed of Cancer".  
She writes about being diagnosed with metastatic cancer of the liver, and with or without chemo or surgery she would only have a few weeks to live.


She went home and told her husband and they began to pray.  She told her family she didn't want to hear the words cancer or death or sickness in their house.  She asked god for healing and god always gives you what your heart desires.  She read scriptures everyday, even as she felt the symptoms she would keep going... doing house chores, cooking, laundry and taking care of her family.  Continuing to pray and thank the lord for healing and speaking of his healing words which she knew were acting in her body, even on those days she lay in bed unable to get up.  She would push forward the next day.  
Having total faith, never wavering and when she doubted she would first tell the devil to stand away that god had her in his care.


She was sent home to die, but God had a different idea for her.
She was healed 100%.  Her doctors believe it was supernatural healing.    




So I read her book every day and pray the same scriptures that she listed for healing and even though I pray to Jesus for healing and thank him, every once in a while fear and doubt sneak in. 
I wonder why I am worthy?  I am because I turned myself over to God.  
I can say that I feel now so much more at peace and lighter.


My worries are just not there like they used to be.  It caught me off guard at the Dr. this morning to hear words like terminal and 3 to 5 years survival.  I had been all this time knowing that things were getting worse but just not paying attention.  
Now instead of fearing what is ahead, I need to believe the doctors have healing power.  That God promised it to me.  When I have those moments (which are getting fewer and fewer) I rebuke Satin and restore my love and trust to the Lord.
I am doing my best to live the life he wants me to.  After years away it is wonderful to be back and in a church that feels like home.  So, I don't consider myself a crisis Christian.  Just a child of God.


We went over Father's Day back to Bend to meet up with my brother and our cousin.  Every year we meet to have a little memorial and to catch up with each other.
We had a beautiful suite right on the Deschutes River, extra comfy bed and a fireplace. We'll go back there next year.  Everyone was so nice.

These are pictures of the spot where Mom, Uncle Jimmy and Aunt Donna's ashes were spread.  I love this cannon.  It is so peaceful up there!  I am not sure how many more years I will be able to make the climb, but I will go every year as long as possible.

So, after such a long silence...... I will be back to update after my Portland trip.  Sorry to all of those who follow my blog for the long absence.  

Another update. File on it's way to Stanford

So, life has gone on as usual.  Me going to Dr. appointments and always waiting for answers which seem like they never come when they are promised.

I am just very frustrated.

My last Pulmonology appointment the respiratory therapist told me I should hear from Stanford within 2 weeks of them getting my file.  I even asked again if it would be 2 weeks?  Or should I be more realistic and think about a month or so?  No... she said 2 weeks.  That was on the 4th.  Today is the 9th and she just called this afternoon and told me she just sent my file, so I should hear from them soon.

I have seen the Urologist like everyone wanted me to, and he told me what I have is a large tumor 4-5 pounds pressing on my bladder and has been there growing along with my symptoms for 5 years or so.  It needs to be removed along with my uterus.  To do that and put me on Vesicare my urine leakage problem will be solved.

I went yesterday for blood work at the hospital and today I went in for a contrast CT scan of my thyroid which she described as several small goiters.  Goiters?  Really?  First I had heard of that.  Anyway, who knows what will come from this.

My daughters best friend since grade school (who is like my own daughter) works at a mortuary.  Actually Brittney just went to work there part time in sales to make some $$ while still going to school full time.  Any way, they both came over yesterday and I bought a cremation package from them and bought a plot for Bill and I.

I have written my will and had it notarized.  I have my advanced directive in place and my life insurance policies paid up.

I am remaining positive.  I know it sounds like I am getting everything in order for me not to come home from surgery.  Nope.  I just want to have everything in order so I will have no worries.  I have lost both parents and both times had my step mother and father steal everything from me and my brothers.  My parents weren't prepared at all, had nothing in writing and their wills were a joke.  So... I am just being careful.

I have felt TERRIBLE the last week.  Every since I had that lung infection (I am still on the steroids from then) I have had that pain in my chest terribly.  And, the last 2 days my normally on the high side blood pressure has been really low.  I have cold sweats, then get freezing and then hot.  My hands shake so bad I have to be careful when I pour things so I won't spill.  

Today I actually was relieved to hear my file will be looked at next week at Stanford.  Like I said though I still have no delusions that I will hear from them soon.  If I hear within a month, I will be o.k..  Until you have been the one waiting and waiting to be seen and evaluated and hopefully be made better... you really don't know how exasperating it is and how it takes all your energy just to wait for something that your not even sure what it is.

It's getting to the point where I am taking my meds and going to bed earlier and earlier so I can just get another day past.  Pretty sad isn't it?!  I should be doing all I can to enjoy these last few days prior to surgery.

There are so many unknowns I can't even think about them anymore.  I will get my answers when I get there and have no choice but to be patient until them.  I have to let Bill and Brittney do some of the worrying about our house and dogs.  I want to focus on surgery, therapy, and healing.

As always I will keep you updated.

Stanford and Prayer

So, it's been a while.  I have had a few Dr.'s appointments and gotten some news.  I needed to absorb it before I began to comment on what's happening.

It seems life goes along at a normal pace then for a few days it is a blur.  A blur of fear, sleeplessness, upheaval and doubt.

I think in my last blog I mentioned that my Pulmonologist wanted me to come back in and re-do the Spirometry test they had done 9 days before.  So, last Thursday I went in and re-did their test.  Firstly I had lost 6 pounds in 9 days.  Yeah for me.

My test results showed (confirmed) that my breathing percentage had dropped 32% in 11 months.  They seem to think that was very fast and at that pace I needed to be sent to Stanford to have them take a look at me, especially for Lung Volume Surgery.

My Respiratory Therapist suggested I hold off on all surgeries or procedures and let Stanford deal with those.  She sent me home with the words... you WILL hear from Stanford within 2 weeks.  I even asked her if that was pushing things?  And, she said NO.  Once they receive my file they will want to see me.

In the meantime I had an appointment with my Primary Care Dr. who remember I had asked to be my go-between with all my doctors and procedures they wanted to do on me.  Well, she said that she wanted me to keep all appointments..... even with the Urologist in Medford (which I had cancelled, now tomorrow early I have to call to see if I can still keep my appointment).  She said that the Gynecologist is concerned about my lungs and surgery.  He also wants to get all the results from the Urologist so that if something can be done with my bladder and urine leakage then both things can be fixed in one surgery.  He (the Gynecologist) told her that he had been in contact with my Pulmonologist who said at this point with me he doesn't feel confident putting me under and putting a breathing tube down my throat.  That IF I were to have any surgeries here they would do a spinal and keep me awake monitoring my breathing.

This made my Primary Care Dr. suggest that if this procedure is needed (which it is... I have a 4 lb tumor growing on my uterus), then perhaps it should also be done at Stanford.

So.... I have all this information, but yet I know NOTHING.

I don't know when I will go down there?  I don't know how long I will need to be there?  I have not been through a Pulmonary Rehab Class... and I have been told that is a requirement prior to surgery.  If that is the case I would have to stay down there for the rehab because we do not have one within a hundred miles of me. I am not sure how long those classes are, but I think 5 days a week for at least 2 weeks.

I don't know if my insurance will help pay for traveling expenses.  Stanford is about 7 hours away and I drive a Dodge Durango with a magnum V-8 which is great in the snow, but sucks the gas down like a little kid drinking a slurpy!

I don't know if Bill stays there with me if they will have housing for us, and how much it will cost to stay there?  I don't know while we are gone what will happen to our dogs and house?  I don't know anything and it eats at me.

Oh yeah... speaking of it eating at me..... my Primary Care Dr. (whom I love) says that I DO need counseling.  That the amount of stress I am under right now and not sleeping will make any surgery or procedure harder on me.  So, she is seeking a referral and will have them call me to make an appointment, and has increased my anxiety medication and the dose of what I take to sleep at night.  I am up to 9 pills in the morning, and 1 at noon and 4 at night every day... plus 2 inhalers and my O2 of course.  I spend more time filling my perscription holders than I do doing anything else.

So... when I know anything, I will spread the word.  In the meantime hang in there with me.

Last week I had asked a friend of mine if I could accompany her to church?  She picked me up this morning and I enjoyed myself and left with a feeling that I would be protected.  It was the first time in about 13 years I had been to church and I actually opened myself up to the possibility of Gods love and devotion to me, and mine to him.  Before I had always attended but never felt I was worthy of a relationship with Jesus.  Today was somehow different.  I left feeling like a weight was lifted, I am not as afraid.  I will not lie and say I have no fear, because I do.  But I know I am in Gods hands and I have so many praying for me.

So... This is my update.  So much to take in, yet not much news.  Welcome to my world!  lol

I got the news I have been dreading!

"It gets under your skin, life. ... It's a habit that's hard to give up. One puff of breath is never enough. You'll find you want to take another."
- Terry Pratchet, Hogfather

I found this quote this morning and it seems to fit.

Brittney and I went to my Pulmonologist's appointment yesterday afternoon.  I thought it would be a breathing test called FEV1 and then have the doctor tell me the disease had progressed and come back in 6 months to watch further.  I was dreading hearing that it had progressed, but I knew it.  I have felt it... I just didn't want to hear how much.

I have a entire page of #'s.  I have forgotten what they all mean.  I had forgotten as soon as I left the office.  I walked in damaged but hopeful that I would continue on like this, maybe taking things a little slower.  I left with actual words that scared the hell out of me.

Words like, one bout of pneumonia could kill you.  Without surgery or transplant your days are numbered, maybe a couple years.  

They will be sending my file to Stanford University and are pretty sure that I will be qualified for a surgical procedure there.  

That they will contact me, and if my stats meet their criteria I will go there for a few days of testing, then if the tests meet their standards I will either receive Lung Volume Surgery or a Transplant.  

I asked my doctor "If I were your wife, sister or mother what would your recommendation be?"  I told him transplant just scares me terribly and I would like to use that as a last resort.  That if I had any say in this I would like to do the Lung Volume Reduction Surgery first which would buy me 5 years or so, and then I could be listed for transplant.  He said after transplant he could say the average life span is 10 years.  He said people live longer than that, it will all depend on my body, my heart and how well I handle the anti-rejection medications.  

He also told me that I may want the reduction surgery first, but it will inevitably be Stanford's decision as to which will fit me best.

After the testing yesterday and the news I came home and told Bill and he had little reaction.  I want a reaction from him!  I did tell him that I NEVER want to hear from him again that "I deserve this because I smoked and he tried to tell me." And that "I told you so".  Then he found beer and started drinking so I went to bed at 7:30.  Not so much because I was so tired, but because I had a terrible headache (which I am sure was just stress caused), and I was beginning to have chest pain... which meant an anxiety attack was coming.  I took meds and was asleep by 8:00.  

I have been up since 2:30.  I was tossing most of the night, I couldn't shut my brain off and all I could do was think about surgery, what if I didn't make it through... how would Brittney and Layla take it and handle losing me?  You know the gruesome thinking that comes when faced with mortality!  I hate going to that place... but I can't help it.

My brother called not long after I got home from the doctor and like he knew something was going on he asked how I was doing?  So, after explaining things to him, he suggested I start going to church.  I have never been one to go for organized religion.  I believe in god and was raise in an Episcopal church.  I feel awkward about going now and asking for prayer only because I am  sick.  

I was glad to talk to him.  He said to keep him updated and we would try and move mom's memorial gathering ahead to maybe May if needed.

I can't imagine that Stanford will get back to me that soon.  I expect months.  We'll see.  In the mean time.... I plan to live.  

Like each time I get bad news... I need a few days to absorb this, to feel a little sorry for myself and to panic...... Then I will pull myself up and get on with things.  

I finally have news

I have been wondering how to write this?  It's not that easy.  I don't even know exactly how I feel about it.  It is the oddest feeling.  Sometimes relieved, sometimes hopeless, and other times just numb.

So... Last night I got the call I had been waiting for.  As soon as the woman told me her name and where she was calling from I swear it was like I was in a tunnel hearing only her words.
It was a call from the University of Washington that I had been waiting for all this time.  Whatever she said would determine my future and how it would be lived.

As it turns out... I will not be having the surgery at this time.  She told me my FEV 1 #'s are too high to qualify for  the surgery.  She told me to continue on with my Pulmonologist and they will be testing me every 6 months. 

This is bittersweet for me.  I was scared to death to have the surgery.  What I read online and those I spoke with had extreme anxiety and discomfort with the surgery and post op.  However, if the results were good there was a chance I could come off of oxygen for maybe years. 
I had been preparing myself for it.  Losing weight as fast as I could, going through all those tests, laying in bed at night wondering if I was going to come out of it... I had talked myself into it.  Set my mind to it.  And now........  Well... Now nothing.  I will go on with my days just like I have been for a year.

I feel like this whole year has been building to this and now I find out I will continue to decline until I get serious enough for them to do the procedure.  I have no idea how long that will be.  It feels odd to just be left to decline.  That is the nature of emphysema/copd though. 

One does not get better.  I can and will however do whatever I can to slow the progression down.  Losing weight is helping to make breathing easier... not better, just easier to get air in.  Does that make sense?
The slimmer I get I think the easier it will get also.  I am exercising which will help my lung function.  It doesn't matter to me that I exercise with a cannula on.  I had hopes of getting rid of it.... but that is just not to be.

It's really odd to finally after all these years be smoke free, be exercising, losing weight & taking better care of myself ... only to continue on a downhill slide.

Please don't judge me badly for being so dramatic.  I will see the positive in this.  Already I am telling myself look... this is what you have to work with and you can only do what you can do.  I am putting all my effort into taking life day by day.  I am trying to have no expectations beyond tomorrow.  All I can do is take it one day at a time. 


(This will be my last post with the label LVRS)

A look at my program


Here is a look at this program I am following.  
This is just one day.. yesterday ... and it tracks everything for you.  My favorite part of it is being able to plug in my armband at any time and find out what my caloric deficit is.  It tells me to stop eating, or to exercise more, or that I am right on track each day.  So, truly if I don't make my 2 pound goal each week it is 100% due to my own sabotage.

This shows my deficit and below the graph shows how many calories burned during a period of time.  (this is not a normal day for me as far as intake goes.  I try and keep it around 900, and my deficit at 1000.



With each meal I get online and add my foods eaten.  The program holds food eaten a lot into memory, some I have to add the recipe or nutrition information off the package.  The pie chart shows me how balanced my meals are



The graph below shows my exercise ... The intensity and the length each time throughout the day.  I am trying to build up to 1 hour. 





Once a week (after my Weight Watchers weigh in) I come here and update my weight.  then every 2 or 3 weeks I take measurements.  I like seeing the measurements... it shows me areas to concentrate on.




With every plus is a minus.  LoL  This shows me how on track I am with my goal.  I am currently 4.24 pounds off track.   



A loss is a loss is a loss!  I repeat that over and over again.  Today my loss was .8 bringing my total weight loss to 24.2 pounds and a weight of 199.8 .

I broke the 200 mark.  I hope I never see it again.  Good riddance

I have been working out with one of those mini trampolines.  I "walk" on it, trying not to bounce just use it for momentum and resistance.  I also have just started using 2 pound hand weights while "walking".  I know that it's working.  My legs and butt are getting more toned.  I am not even thinking I am toned, so don't get me wrong.  What was a handful is now less, my clothes are getting bigger and my ARMS (so happy about this) do not have quite the lose chicken wings they had a few months ago.  As you can see from the pictures up there, I only exercise for 10 minutes at a time.  This however is all I can do at once.  If I can do 6 sets of 10 minutes per day then I will work on maybe 4 sets of 15 and so on.

I am disappointed in losing less than 2 pounds a week.  But it is my "emotional eating" that is getting in the way.  The only difference between now and last year is that when I eat to soothe my emotions or depression I eat healthier and realize as I am chewing what I am doing.   And, the one thing that saves me is I don't keep junk on hand anymore.  If Bill has something I ask him to keep it to himself and out of my sight.

It's something I need to work on.  Eating because I am upset or bored or depressed will only make things worse.  Finding healthier ways to deal with life will be a wonderful achievement if I can ever truly get there.

Yesterday I made some really good Chili.  It is my own recipe.  I'll post it here.  I plugged it into the recipe portion and it gave me the caloric total which is 124 per cup. 

Kellie's White Chili

2 Tblsp. olive oil

2 lb chicken breasts, cubed

1/2 cup onions, chopped

2 cups chicken broth (fat free, low sodium)

2 4ounce cans chopped green chilies

2 tsp. garlic powder

2 tsp. cumin

1 tsp. oregano

1 tsp. cayenne pepper

2 cans white kidney beans (cannelloni) undrained

2 cups fat free sour cream

Heat olive oil in saucepan; add chicken and cook for about 5 minutes, stirring often.

Remove chicken.  Add onion and cook about 2 minutes. 

Stir in chicken broth, chilies and spices and let simmer 30 minutes. 

Stir in chicken and beans; simmer 10 minutes. 

Stir in sour cream; heat through and serve. 

Can serve with chopped cilantro and tortilla chips

makes about 10 cups

124 calories per cup (not including chips and cilantro)

Bill says this should come with a warning.  LoL  It is HOT, but one of those hot things that only really hurts once you stop eating it. 

If you don't like heat... leave out the cayenne pepper

My depression has reared it's ugly head again.  It's not so out of hand as before, but I have that urge to run from issues, to sleep life away and to avoid anyone.  It's difficult because Britt's boyfriends mom and I have become friends and she would really like to do things with me, and I would rather lock myself up and not have to put on a happy front for people.  I can do it rather well, but once in a while I crack and if someone were to bring up a touchy subject I have been known to  tear up... which is so embarrassing! 

My emotions are so close to the surface these days, I find it easier just to stay at home around family who knows I am a crybaby.  It's really odd, but when I have the most problems are when people are kind to me and ask things like... "How are you feeling?" or look at me with their head turned sideways and say "are you O.K.?"  I want so badly to tell them I am living.  I am breathing, and as far as I know my heart is still thumping.  That is a good day for me.  I know they mean well, but I can see that "look" in their eyes.  It's the same look that my family had the first couple times they saw me with a cannula on or struggling for air after just talking or telling a story.  I don't do well with compliments or sympathy, I never knew or learned how to react to it.

It is coming up on a year that I have been writing this.  I think it started around the 5th of February.  It will be interesting to go back and do some reading and comparing. 

I almost made it

Today it reached 23 for our high temperature.  We had fog all day and it froze on all the trees and fences.  It was beautiful, but I knew as soon as I stepped out the door I wouldn't be able to spend much time outside.  Along with the fog hanging in the air was also smoke from wood stoves burning. 

I went to weigh in this morning.  Yesterday I was worried about gaining weight.  Today I feel pretty good about my week.  It goes to show you the importance of exercise.  I lost 2 pounds.  Bringing my total weight loss to date to 23.4 pounds and that is more than my 10% goal. 
So, it took since August to now to lose 23 pounds, that's about 4 months.  I know I can do better.  I think with this bodybugg I can about 8 pounds a month.  We'll see won't we?  LoL

I had to make a new goal... so why not another 20 lbs.  That will put me below my goal for surgery.  I have 14 pounds to go for that.  My weight right today is 200.2 pounds.  Do you think I could get under the 200 mark ... NO!!  LoL  Next week I will. 

I can't believe I ever got that big anyway!   Yes, I had back surgery, and yes I have Copd... but if I can get up and move around now... I sure could have done it then.  Unless... continuing to smoke made me so breathless I really didn't do anything extra, just sit around and smoke and eat.  How glamorous!  LOL

Losing weight today was the positive push I needed to get back on track after the holidays.  Maybe it wasn't just the holidays... honestly I think depression has a lot to do with being successful at any thing you are attempting.  If I don't feel good about myself, I tend to sabotage myself. 

I talk a lot about not hearing about this lung volume reduction surgery and I am getting impatient.  Well ... I still would like to hear from Seattle, but I have to be honest and say ... I am scared. 

The Copd site and Transplant site I belong to on FaceBook have lost 2 people since Christmas.  It just makes me realize that this is not a minimally evasive surgery.  This is about as major as it gets.  If those lungs don't work or leak after surgery... or if infection is introduced... it's pretty much over and done with at that point. 

Each time I hear of another Copder that I know passing away or being hospitalized and put on the ventilator it sends a chill down my spine. 
Families of people with the Severe end of this disease must realize that really we are living on borrowed time.  Yes, we can do all we can to remain healthy, we can exercise and lose weight to be kinder to our lungs.... but one lung collapse, or serious infection and we are in big trouble. 

Breathing is necessary for life.  And, if that is halted so is life.  It's that simple.
I have researched U of W's transplant center and they have a very good track record.  I have gotten a good recommendation from my cousin who is a Nurse in the transplant unit there and he sees first hand and he tells me he would send his children there.  My pulmonologist tells me he has full faith in this hospital.  So, I leave it up to the doctors.  They will be able to tell from my tests if it is too soon to start operating, or if it's time. 
The last 5 years of smoking pretty much put this out of my hands.  I have a feeling had I quit 5 or 10 years ago... Yes, I probably would still have emphysema, but I am sure it would be in the early stages now instead of near the end.  Darned cigarettes.

Tomorrow another Weigh in

Tomorrow again is weigh in.  It seems I live my life these days focused on Tuesday mornings and getting on the scale.  It will be another week I am unsure about.  I have been diligent at exercise, but have eaten poorly late at night. 

I have had chest pain and problems sleeping, so I get bored and turn on the T.V. then want to eat something salty... which is usually loaded with calories.  I have tried throughout this "eating healthy" period I am in to let Bill keep whatever food he wants in the house.  A few things like chocolate I ask him to hide from me.  But ... chips, cheese, hot dogs... junk food is all around me.  I just decided months ago I wasn't going to partake any more. 
Looks like I am doing just that though. 

I need to quit playing around and now that the holidays are over... I need to get serious and get back on the right track.  I can't even remember the last full day I drank water.  That's bad when you're trying to flush bad things from your system!

I bought one of those mini trampolines today.  It is a work out.  I thought they were kind of a joke...but I was breathless in less than 5 minutes!  It will be a GREAT cardio for me.  I can use it 5 or 10 minutes a time and burn those calories. 

Britt came over and measured me again today.  It had been over a month.  I lost (averaged) nearly 3 inches in 6 weeks.  That's not so bad.  I still have so far to go, but this is a good beginning, and seeing small goals met makes me want to keep going.
I knew I was losing inches because even my bra's are fitting differently.  I really don't want to buy clothes until Spring.  I figure until then I can roll the waistbands over on my jeans and wear big baggy sweaters and no one will really notice.  Once the weather warms up and the coats come off, then I'll get new clothes.  I am down 2 pants sizes now... buy then who knows??

I am thinking if I were to hear anything about my stress test it will be this week.  Possibly next week.  I know it takes everyone some time after the holidays to get back in the swing of things.  If I don't hear I have a Dr. appointment later in the month and I will hear then.  The way I look at it, if I don't hear... then it's good news and no need to rush into another treatment or medication. 

Who knows maybe 2011 really will be a better year for me.  It's so early to assume that.  I feel like I may jinx myself. 

Final day of Stress Tests for my heart

I had my 2nd and final day of my nuclear stress test.  Day one... go in and they inject a radioactive dye into my arm, take an EKG and send me out to the lobby for an hour with 2 glasses of water to drink. 
After an hour they ask me to remove my bra and put me through a kind of CT scan.  They tell me that the water moves the dye throughout my body but the heart holds it there, the rest is "flushed out".  Then they send me home, telling me no coffee, no tea, no hot chocolate, no Pepsi or coke... nothing of color, only clear fluids.

Of course when someone tells you that you can't have something that is all you can think about!! 
This morning I was to be up there at 8:30 to finish the test.  Of course I didn't sleep all night so when I finally got to sleep the alarm went off, then to have no coffee... I wasn't sure if I could even dress myself without caffeine!

They again take me back only this time to a room with a bed and a treadmill... sounds like a blast huh?!!  LoL
They start an I.V. of something (I forgot what she told me), then they hook up EKG tags all over me, then have me lay still for 10 minutes to get a resting heart rate.
After I am good and rested they get me up and call in the radioactive guys again.  They put me on the treadmill and start it up.  Every 2 minutes they increase the slant and eventually I am at the max uphill slope. 

About half way through the radioactive guy puts the dye into my I.V..  Once I reach the max uphill and my heart rate reaches it's peak, they tell me to continue for 5 minutes.  I get to the point where my legs feel like lead, my heart feels like it is pounding out my eyeballs, and I am gasping for air.  At this point they finish.  They sit me on the bed again and hand me water.  My hand is shaking so bad I spill the first cup and so smartly they wait a minute then get me more.  One woman removes most of the EKG tag thingys, but leaves 3 on... one under each breast and one on the center of my chest.

After my first cup of water, they hand me another and take me again back out to the lobby for an hour.  Then the radioactive man comes out and takes me back to the room with the CT scan.  He again asks me to remove my bra and shirt (my shirt had metal studs on it duh! ) and hands me a gown.  After I get the gown on and tied I go into the CT thingy room.  He tells me he hates asking this question but the Cardiologist needs this information to do some sort of measuring.  I can tell the tech (radioactive guy) is embarrassed... and he asks... What size bra do you wear?  I tell him. Then he tells me to lay down on the CT scan machine thing and he puts more dye into the I.V., then tells me for this test he needs to hook up 3 electrodes.  He reaches under the gown and then stops... I can tell he is uncomfortable... so I said.." do you want me to lift those for you?".  He just laughs and says please... I think he wanted to run out of the room.  I thought I was funny!  LoL

So, the scan does it's job, he comes in and removes the leads but leaves the sticky tags there, removes the I.V. and tells me I am through.  I get dressed and go home as tired as I have been in a long time.  I felt as though I ran a marathon.

I got home at about 11:00 and at 2:30 we had Brittney and Fernando and his mom Maria, and Layla over for an early New Years dinner.  Bill cooked prime rib, I made a quiche and fritters, and we had a green salad and garlic bread.  It was really nice. 
I had just not thought about having this test today when we planned this dinner. 
The reason for it today was, tomorrow night is New Years Eve.  And, even though we have no plans other than setting the alarm clock for midnight and wishing each other happy new year and going back to bed... Brittney and Fernando celebrate like young people should.  They are having friends over to their house to bring in the New Year, instead of having people out driving on the roads.  Smart Kids!!
So... we figured having a New Years Day dinner would be bad, because if they are anything like we used to be they will probably be hung over.
We are having Layla spend the night.  Britt is bringing over some sparkling cider for her to toast with me. 

So... Have I told you how much I want this year to be over?!!  LoL  I am so looking forward to a new year.  My goals each year get much more focused.
If I am not on here tomorrow... Happy New Years my friends.  I only know you from behind a computer screen, but you have seen me through some very tough times and I will forever be grateful! 

Weigh In Day

Today was my Weight Watchers weigh in.  I was not thrilled to go to this one.  I over indulged a few days before during and after Christmas.  Britt went with me and stayed for the meeting this time.  (she usually leaves after weigh in)

Brittney met her goal... she has lost 18.4 pounds and is now the size of a pencil.  LoL  Notice a little pissy-ness there?  She looks awesome and I am very proud of her. 
I was sure I would gain weight.  I told Bill before I left the house that I think about +2 pounds.  Ta-Dah......  I remained exactly the same as the weigh in last week.  I made it through Christmas without damaging my progress.  Whew!!  I am sure the reason was me being more active.  I find this Bodybugg thing very helpful.... I knew that the 24th through the 26th I over ate and bad things.... With this Bodybugg I could burn extra calories to make up for it, and keep checking on my burn progress. 
I have been sedentary for so long that the smallest exertion and I burn calories. 
Vacuuming and going up and down stairs seem to be the biggest helper.  My doctor tells me this is my lungs overworking and that is why I burn greater calories with little exertion.  That is why many people with severe and end stage emphysema get so thin.  They just burn more calories than they take in because they struggle so with each breath.  Bless their hearts!!  Isn't that hard to believe, that breathing is so difficult that it actually burns calories.  Welcome to a window inside Copd/Emphysema. 

Anyway, I was very surprised but pleased that I didn't pick up any weight.  Now it's back to watching food intake.  Bill wants to have a New Years Eve, Eve dinner (on the 30th instead of the 31st), but I had forgotten that I have those tests tomorrow and the next day.  I spoke with a woman who works at the hospital and she said they are pretty draining, about 4 hours each for 2 days.  I am not sure I will want to come home and help cook, or even smile at a house full of people.  We'll figure something out.

I took down all the Christmas decorations yesterday and finished cleaning and moving furniture today.  The house always looks so empty after Christmas, I kind of like the clean uncluttered look, but empty none-the-less.  It's actually probably still cluttered by everyone elses standards... I have so much crap!

So, today we had the beginning of our storms come in.  It started out as rain, then by around noon turned to slushy-snow, then tonight it's snowing sideways.  It will result in bad road conditions and with the weight of the snow I wouldn't be surprised if phone and power lines come down.  Anyway... I ventured out around 1:00 in the slushy-snow to go to the dry cleaners to drop off my bedspread and Bill's Santa suit.  I am beginning to notice when the barometer drops.  The low pressure makes it very hard to breath.  It just makes everything seem very heavy.  On top of that everyone in town is using fireplaces, or wood stoves and the inversion layer is TERRIBLE.  We live in a basin surrounded by mountains and the air gets stagnant.  When burning starts the smoke settles in the basin and it's worse air quality than Los Angeles.  I came home and put on my jammies and decided I wasn't going out anymore.  My lungs have been burning a lot lately, and more so after I have an outing.  I am sure part of it is the air.  I am not sure what I can do to get around that other than not going out... and that time will come soon enough.  For now, when I can.... I am going and doing all I can.

I heard this song on the radio this afternoon.  I had never heard it, but especially these days ... it could be written for me.

I'll let you know how the stress tests go....... enjoy the song. :)

Christmas and New Years Wishes

Today is December 26th and I am tired.  Layla is spending the night tonight and I can tell I need a few days off.  I have a short fuse, and she really is a good girl and doesn't need a Grandma around that gets pissy for no reason.  I try so hard.  I gave myself a time out tonight and went into the bedroom and watched T.V. alone for about 20 minutes. 

I am not sure if it is this illness, or medication or menopause ... or all three, that makes me anxious, intolerable of noise or over stimulation.  I just feel like I will have an anxiety attack if I don't get away.  I am like that with arguments or fights too.  I just can't take it.  Maybe it's blood pressure?  I dunno.

Wednesday and Thursday of this week I go to the hospital (not checked in, just there) for my nuclear stress tests.  I have no idea what they entail?  I know a treadmill and IV's are part of it.  Sounds like a party!!  LOL

I hope it will tell the Dr.'s what the problem is with my heart.  My pulse is just getting out of hand.  I take it now at least twice a day at different times each day to try and get an idea of an average.
The doctor finds this very interesting.  LOL  It has only been below 100 a handful of times and those times are always when I first wake up, or if I have been sitting for quite some time.  It usually stays around 105 until I do ANY cardio, or actually even walking around the house ... then it climbs to 130+.  The Dr. told me to not let it get above 150 for extended periods unless I am sweating working out, which hardly ever happens.

I can ride the bike 9 miles and not break a sweat, then come home and vacuum and sweat. 

So... the Christmas pictures... I was going to re-do the ones with me in them, or a few of them... because I didn't color my hair and should not have worn that red turtle neck... bad choices.  But... the hair is me now... mostly gray.  I am wondering if I should just go get it striped with fine lines of gray to make the natural gray taking over look better? 
It is so dark and my gray is very silver so the contrast is a lot.  Bill says no... he says that I am not even 50 yet so keep coloring it to make me feel better.  Really, my self esteem is low so I am not sure what a little color would do?   Most the time my hair is down, but today I was playing with new facial stuff I got for Christmas when Layla arrived, so my hair was pulled up and in a ponytail.
She asked me when I got gray?  lol  Bless the child's heart... I just told her I always was she just didn't notice.  Then she said that it was because I was sick.  Probably... this year was a tad stressful.  Have I told you I will be glad to get rid of 2010 and move onto 2011.  Maybe I shouldn't be in such a hurry huh?

I joked with Bill and Brittney that I must be sicker than the doctors are telling me and maybe they heard something I didn't because I got very nice things for Christmas... they didn't think I was funny.

I have beginning to struggle with depression again.  It began before Christmas.  I am aware of it, and am doing my best not to dwell on things and I am trying to let family issues go.  Not so easy.
My step parents and my step sister are being not so nice to me or my brothers.  My brothers aren't aware of most of it, for some reason I can't not think about them or how they are disrespecting my mom and dad.  I know none of this makes sense to anyone reading this... there is so much history I won't go into... it just is painful.

I have also been not following my eating program or exercising for a week.  I know this weigh in at Weight Watchers will show a gain.  I must get control of myself and get back on track.  One week won't kill me, it will just set back my progress.

I have goals for the coming year.  I still have no idea about surgery.  So I am planning things...
-I want to take Layla and Britt to Disneyland over their Spring Break.  Our best friend and his wife live in Long Beach, Bill and he were firemen together, and I miss them.  I want to take about a week and a half and just RELAX... not think about being sick... or testing... or medication adjustments... or anything and just RELAX!
- I want desperately for Bill and I to get away even if for the weekend and go to the Coast and just be still together.  We need that. 
- I need to finish my will... hopefully before the surgery.  I want everything to go to Brittney and I am afraid that if I don't get it written legally, Brittney will go through what I did with her step sisters and Bill.  I hope Bill would be fair.  But I tell you strange things happen to people when someone they love dies.  Bill's girls never really liked me and never came to see us or sent cards or anything... once in a while a call but that's about it.  I have repeatedly told Britt I will leave it up to her to hand out my things as SHE sees fit.  She knows what will be special to her and what she can part with.  And, I tell you..... When my mom died all her things became the world to me.  Not because value... because quite frankly there wasn't that much of value... but they were hers.  She loved them and they made her feel good to have them around, so I wanted them.  Sadly, they went mostly elsewhere.
- LOL  To not let outside influences bother me so much.  Such as things I have no control over; ie... Ex parents and step sisters and family break ups.  These things torment me and I need to find a way to put it all in my past.
- To continue with my exercise and eating healthy and losing weight.  I have my goal set at 150.  I am hoping 2011 will be the year I do this for myself. 
---- I would say ..... "To take better care of myself", but oddly enough once I got diagnosed with a incurable disease I started taking the best care of myself I ever have.  Funny how illness makes you stand up and pay attention!  Ridiculous!

Brittney (my lovely thoughtful daughter) bought me 2 books and wrote a note to me about HOPE.  The books are ... Eat, Pray, Love ... and ... BLINK (the power of thinking without thinking).  It touched me that she is worried about my ability to have hope.  It also worried me a bit.  LOL  I don't want, and have tried so hard to not let this process and disease be a burden to her.  She wants to go to Dr. visits with me.  She is now wanting to switch majors and go into Respiratory Medicine. 
I think this has touched her more than I thought.

It's hard to want to protect her, and to have her not worry about me, and then have her hear all the Dr.'s words.  She is a young woman who has drive and determination and who used to see that in her mom.  Anymore, she takes the lead in situations that I used to take care of.

An example of my struggle with memory and thought process.  For Christmas I got an IPOD.  I asked Brittney to come over and show me how to upload music, set playlists etc... she said "Mom, I can't believe you need help with this.  What has happened to you?  You used to be so tech savy?"!!
It took me by surprise, but so many parts of my life are like that now.  Areas that I once felt comfortable and competent, now... I am scared and unsure.  It worries me actually. 
It seems to have come on quickly, and is continually getting worse.  My memory issues now have Bill standing up and taking notice and commenting his concern on. 
All these things put together just make me feel fearful and unsure. 

There are moments that I can almost feel what it is like for an Alzheimer's patient or an elderly person suffering from dementia.  It's like I know something that is right there within reach, then it goes and I can't recall it.  Things such as the computer I used to be so familiar with, now I forget or am so unsure.  
Sometimes going out by myself worries me.  Such as when I ran out of oxygen at the store last week or the week before?  I knew that if I walked all the way out to the car to exchange bottles then I would have to walk all the way back to where ever I would leave my full cart... it was just a reminder that I am not the self sufficient woman I was not long ago.
It is a reminder of what I have actually lost this year!
It makes me scared to imagine what I could lose this coming year?